Just need to send the eldest to uni 3 and a half years early for her room 
Thanks for the replies, will definitely have a word next time he wants to have a Parkinsons related conversation in the night. Have got by on coffee today 
Jean - hang gliding! A bit of a shock for him when he woke up! And for you of courseā¦
Rach - yes, have the word BEFORE you go to bed and reinforce as necessary.
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hi Soph21 I just wanted to add to my previous post. My husband currently [from February 2022] has a diagnosis of unspecified dementia secondary to Parkinsonās Disorder. He has a referral to Neurology for the possibility of Idiopathic Parkinsonās Disease vs Parkinsonās Plus. I was concerned because I booked a holiday in Croatia 2.5 years ago and our insurance company were saying that they couldnāt cover him for the referral to Neurology as they couldnāt screen a condition that hadnāt formally been diagnosed. The consensus from the Parkinsonās society was that if there is no Diagnosis there is nothing to declare. I have phoned UK Insurance [Nationwide Travel Insurance] today who have told me that, since the holiday was booked before the present diagnosis was given, there is no need to declare it. We shall just need to declare when/if a further holiday is booked. Hope this is helpful??
Hi
I would welcome support from you. MY hubby was diagnosed January 2020. Only just coming to terms with this. Is symptoms have worsened of late-hoping that his new meds regime will help. Heās only 62 & I am 55. We have a beautiful 4 month old granddaughter to focus on. But I canāt help but worry about what the future holds.
Hi nurseydid,
Welcome to the chat.
It is so difficult not to think about the future and what the future holds. We could spend all our time worrying about what if and all the worse case scenarios. If I am honest before my husbands diagnosis I would always worry about our future in case anything happened to us as we get older. We canāt torture ourselves wasting time worrying about the worst things that could happen. Enjoy your time together and live your lives.
We are all here for support. X
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Hi Nurseydid
I am a born worrier, most of what I worry about never happens Iām glad to say. When we had the diagnosis of Hās symptoms strangely it was a relief. Not that I donāt know a fair bit about PD but it was something concrete to work with, if that makes sense. I had for the previous couple of years gone through all the worst case scenarios and how I would cope with them Now I have done that and am determined to live for the day. There may be a cure round the corner, who knows? Congratulations on your lovely granddaugterā¦ X
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Hi everyone my name is Sheila and my husband and i have been married 46yrs this year but feel like im losing him , Jean1 im so sorry to hear abot you husband reading your post about your husband and what your going through , that is exactly like my husband he was diagnosed with mild PD just 6 months ago mild shaking hand anxiety which heāshad for several years really since losingboth his parents they were in their late 80s, its not knowing what to expect heās vey emotional all the time he is forgetful but the consultant has done test for any mental problems like dementia and they are fine , just our business passwords on the computer if he stops to think what they he cant remember and panics then another time he goes straight in , i have to sort his meds out or he will forget but hes always been like that as he hse been on medication for type 2 diabetes for years. I do feel overwhelmed as he had prostate cancer nearly 5 yrs ago and hes PSA tests have been clear, i feel i need looking after and help with chores as 2 yrs ago i had a mild heart attack and stent put in and recently a knee operation . He has know hobbies he will take our dog out once a day but then just likes watching documentary on tv , maybe thats his way of coping , i do have lots of support from my family but they are all busy with their lives but i dont want to burden them like everyone on here just keep going and hope it doesnt impact to much not only on both our lives but my husbands because his worst fear is becoming ill later in life not being able to do anythingā¦ Sheila
Hi Sheila
Can your husband help you with jobs as you have your own health problems? We are at the start of the journey as well my
Sorry, must have pressed the wrong thing!
My husband is now the person who washes up, after many years of marriage as he can do that fine and his tremor doesnāt matter. He would sit all day on his tablet or watching TV but I put my bossy hat on and make him do things. We also have a dog, I take her the morning walk and he takes her in the afternoon. Exercise is good. He has never been sociable so clubs are out. I too have to remind him about medication. I think we just have to take it day by day and try not to worry about things that may never happen. Try to have some time for yourself whenever you can. X
DH finally picked up his prescription for Rasagiline but has now decided that he doesnāt want to take. He is worried about the side effects and that it will be a slippery slope to taking other medication. I have tried to point out that the doctor must have thought it would be a good idea. This is the second medication that he has refused, the first being Simenet. Do I badger him to take it or respect his wishes and keep quiet?!?
Hello Sheila,
Welcome to the group.
What a tough few years you and your husband have had.
Sometimes you think your life is so much worse than others then you read stories like yours.
I had a bad day yesterday, a feelings of negative thoughts of my husbandās PD. He started a different medication on Friday and he had terrifying nightmares during that night. I just couldnāt help but think is that what it will be like. Itās awful really because my husband has to comfort me and reassure me but it should be the other way round. He told me how it may not always be like that with the nightmares. He was right of course because he had a peaceful night last night.
It must be difficult for you with your own health issues and having to do chores around the house. Could you maybe hire a cleaner once a week to take some of the burden off your shoulders?, The most important thing is taking time out for yourself, just to relax and have times where you can put things aside.
Please talk to us on here too Sheila, most times just writing out how you are feeling can be a massive help.
Sending you a big hug. You are doing just great.
Morning Rachrob,
How frustrating for you. I totally understand how your husband feels because some of the side effects are quite scarey to read. I feel the same when I read the side effects and Iām not the one having to take them. Itās such a shame they have to list side effects on any medication but because some people have suffered side effects they have to. Thatās the thing though isnāt it SOME not everyone. Your husband canāt help think about the worse case scenario happening with all those side effects on the list. Somehow he needs to understand that not everyone will get those side effects and if he does he can come off the medication and try different ones until he finds one that suits him.
If only he could understand how the medication just may well help his symptoms and allow him to get on and enjoy his life. Maybe some words from you will make him understand. Do you have any friends or family on any medication that could have a reasurring chat with him.
You never know after a while your husband may come round.
Waking in the middle of the night it all goes round my head and I have to say STOPā¦ One day at a time. We watched a recorded Car SOS last night, and if course the recipient had Parkinsons and was very unwell - my H commented on it. He doesnāt say much, just a comment every now and then. Iām sorry you are going through a bad patch Rach and Lizzie. I hope things improve for you and for us all. X
Thank you janey
I am much better this morning. Woke up to a lovely sunny morning and me and my husband have been on a lovely walk around the local canal. Always does my mental health the world of good to get out to the outdoors. Today is different day and Iām determined to have a positive and constructive day.
Love to you all. X
Hello
My husband as ad pd for almost 5 years he was 40 then. Still learning and adapting as this Changed our lifes completey and seemed to change so fast. He cant go to work anymore, so keeps himself busy in his shed. He doesnt talk about pd very often and when he does its frustration with it. But we carry on take each day as comes and just fo what we can. He as hospital apppintments with the pd nurse every 3 months.Dawn x
Hello Dawn, welcome to the chat.
Itās sounds like your husband has been quite effected by PD if he has had to give up work within 5 years of being diagnosed.
How are you yourself coping, do you have support?
Hello all, reading your stories can be both heartbreaking and heartwarming. Iām on a rollercoaster ride myself. One day things are great and I hardly think about PD then another day everything seems to implode and I canāt help dwelling on all the negative aspects of our life. When I hear friends are booking breaks away or simply going off on long walks or bike rides together, I just feel so envious as these were things we both enjoyed until last few years. I know I should just stop dwelling on the āwhat ifāsā and book us a break regardless, but it feels like just too much stress to bother. I worry about if he falls and Iām on my own, how heāll be in a hotel room out of familiar surroundings and if he has an āaccidentā in the night and canāt make it to the loo on time etc, etc. I realise reading this back that Iām talking myself out of even giving it a go, but even when we are out for a day I just canāt relax and enjoy things the way we used to. Iām hoping my son will come and stay soon so I can get out for long walks a few days with friends on my own. Also my sister has booked us a three day break away with her and her husband in June. I find when Iām with others I relax more as some of the burden is taken off me. But it also works the other way as Iām anxious not to spoil their break if he isnāt too goodā¦ Sorry to post such a negative text but sometimes itās hard to keep cheerful. I really hope everyone is having a good day today
It is hard to keep positive and cheerful all the time. I think Iām going to label a cushion Parkinson and give it a good thumping every now and again. My husbandās arthritic ankles have meant we havenāt been able to have evening strolls for a few years. I have already mourned that fact, it was very difficult to come to terms with. If you canāt relax on a break away with just the two of you it may be best to give it a miss and just go with your sister and her husband? X
Hi Janey, yes I think itās probably better to just go away with other people now, or by myself with a friend occasionally, but I also feel like Iām just giving up too easily by not giving it a trial at least. We were never people to go on holiday with others, preferring our lovely walking holidays together as and when the fancy took us, but I know I have to accept that those halcyon days are now over. Iāve been out for a walk with said sister this afternoon as she recognised I was feeling low and picked up on it. Sheās been a real star and is my rock. Couldnāt have coped without her these last few years especially throughout lockdowns. I felt so much better for the walk and a chat. Thatās all it takes sometimes doesnāt it? Have a good eveningā¦
It really is a case of taking each day as it comes isnāt it?!? DH is still a refusal at the gate for the Rasagiline. He says that the doctor said it he would prescribe something that would slow the Parkinsons progression and not deal with symptoms. DH says Rasagiline deals with symptoms and therefore he wonāt take it because he doesnāt feel like he has symptoms. His next appointment with the consultant is in July and he is going to wait until then. DH is very low and argumentative at the moment and was particularly arsey when I mentioned that the doctors know what they are doing. I wonāt be mentioning it again. Bloody hard work.
Sorry to moan again.